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Joined: Sep 2006
Posts: 1,357
Likes: 5
"OCF Canuck"
Patient Advocate (1000+ posts)
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"OCF Canuck"
Patient Advocate (1000+ posts)

Joined: Sep 2006
Posts: 1,357
Likes: 5
Sounds like you had a good time and learned a bit. You sound like you were very well prepared. I hear you about trying to wash everything in a hotel. Frustration. I finally took to washing my blender in the bath tub.

You did a lot of great things - pre-grinding your meds and taking liquids. I have a case made for my Vitamix - bought on Amazon and it works great. Eliminates those “play blenders”! For a short trip I take all my meals - frozen. Works well for me. I think about packing pre-tube and am amazed at how much stuff we have to take along - but it is a fact of life.

I took 72 tetra paks of formula to Mexico. In one 50 lb suitcase which the airline allowed up to check for free and the rest spread amongst other luggage. When in the UK I ordered formula from Amazon, and blended other meals. I learned the term “take away “ in the UK!

Glad you are home and made out well.

Donna



!
,


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
Joined: Sep 2024
Posts: 4
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Joined: Sep 2024
Posts: 4
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Very much enjoyed reading you perspective. Very positive. I was on PEG diet for only a little over 3 months during and after IMRT to the head and neck.
Im 8 years out now but am having swallowing issues after ORN and jaw reconstruction.
I sometimes contemplate on what if i permanently loose the ability to swallow.
Thanks for your thoughts and the fine work you are doing.

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